Thursday, July 25, 2013

Autistic Attitude: 'The Boy Who Doesn’t Talk In Class'

By Prashant Munde / INN BureauDear Principal: do you have a problem with an autistic child in your school? On a rainy June morning, a mother in her late thirties sat on a chair in a school corridor trying to convince her five-year-old son to enter a classroom. It was the boy’s first day in school. Aiding the mother was her elder son, a boy of less than 10, who had excused himself from class in the same school. Half an hour passed, but the younger one would not budge. Eventually, a peon had to forcibly carry him in.Kick and scream, the five-year-old did not, but his mother had a single worry to battle the rest of the day: would her son adjust to school? The boy had been diagnosed with autism when he was only two. Until a little over a year ago, he did not speak. He would rarely communicate with others, or even respond to sounds. With therapy sessions, however, his condition has improved remarkably. Like all applicants likely to be granted admission to the school, he was subjected to a medical test.In his report, the examining doctor made a note of the boy’s condition and told the parents—to their annoyance—that he should be enrolled in a school for children with special needs. With the boy’s admission on hold, the parents tried to meet the principal but could not. The school did eventually admit him, though, after that delay.Even so, his mother was anxious about what teachers might make of his behaviour and was relieved to see him smile and wave as he got off the bus after his first day in school.There is a strengthening belief in the West that children with special needs are best put through regular schools. This is in keeping with the ideal of inclusive education, by which children are not segregated from the rest—to the extent possible—on account of alternate abilities. It helps such children understand and engage society at large, while ensuring that regular children accept those who are not like themselves.The broad principle also has its advocates in India. The Right to Education Act specifies that every child has the right to education in a neighbourhood school. The debate, however, is over what is good for the education and well being of the differently abled: a regular school or one meant especially for them.As you read this, the debate is being played out in the Bombay High Court. The case concerns the expulsion of a seven-year-old autistic child by Jamnabhai Narsee, a school in Mumbai’s upmarket suburb of Juhu. According to the school authorities, the child, studying in class 2, has severe behavioural problems, cannot communicate with teachers, and that his continuing in school is detrimental to the education of his classmates and own self. The child’s parents argue otherwise.They appealed to the High Court and Maharashtra State Commission for Protection of Child Rights, which instituted a committee of experts to observe the child’s behaviour in school for a month. After watching the child for 11 days, the committee suggested in a report that the child be allowed the help of a shadow teacher in class, but the school’s lawyers insisted that the child be monitored for another 19 days.The school and parents declined Open interviews for this article. However, according to a source closely connected with the case, the school is not accommodative of children with special needs and remains reluctant to allow a shadow teacher—an educator to help the child along—in the classroom.Some educationists say that while special children need to be educated in regular schools, the latter have so many students that they find it difficult to provide the one-on-one care that is often required for autistic children. In the words of MP Sharma, director, GD Somani School, Cuffe Parade, “We have to be careful that inclusion is not isolation.Special children can be in a mainstream school but so isolated that their lives are miserable.” While he supports having autistic children in regular schools, he says, “For special children to get the right education in mainstream schools, the schools need to have the wherewithal: the right staff, experienced counsellors and special educators. Many schools fall woefully short there.”That schools should turn children away in a city known for its accommodative spirit shocks many parents. Lieutenant Colonel SK Tewari, a former officer, moved from Raipur to Mumbai in search of welcoming schools and then had his nine-year-old autistic son rejected by eight of them before he got admission to one in central Mumbai. “It’s a good school. But we have to spend over two hours every day driving from Juhu to Lower Parel and back. We’ve been trying to see if any of the [closer] schools accept him,” says Lieutenant Colonel Tewari. Otherwise, they might have to relocate to yet another city.A special educator who works with various schools in Mumbai says that many schools which do admit such students often reverse their decision at some point. He cites the example of an international school in a Western suburb of the city. When it opened around three years ago, it accepted all students, but later started asking parents of special children to withdraw them. The educator says that a two-and-a-half-year-old boy he was treating for speech delay (the boy understands and follows instructions but finds it difficult to speak) was dismissed by a well-known school in the city. “According to the principal and [school] counsellor, the child should be enrolled in a special school. The parents did not pursue the matter since their elder son was a student of the same school. They got their special child admitted to another mainstream school.”The special educator says that the outcome of the Jamnabai Narsee case will set the tone of the debate. “Whatever the decision, it will set a precedent for the right of a special child—or absence of it—to join a mainstream school.”In another part of Mumbai, a five-year-old with shiny black hair and bushy eyebrows stands atop a chair attempting to thread a string with beads of assorted colours; the boy’s instructor, a young development therapist in her twenties, admonishes him often for failing to follow her instructions and picking the wrong colour. In another corner of the room is another behavioural therapist asking an eight-year-old to solve a picture puzzle of a man ordering a meal at a restaurant; while the girl arranges the puzzle correctly, she is unable to explain what the man is doing. Both children are undergoing behavioural therapy sessions at New Horizons Child Development Centre (NHCDC), which helps children with special needs. Outside, the season’s heaviest downpour so far leaves drains and roads clogged. The parents of the two children stand under a roof nearby.When he was about three, the boy was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), a disorder characterised by impulsiveness, inattentiveness and hyperactivity with traces of autism. During his preschool days, his teacher reported that he never interacted with others and had difficulty adjusting with classmates (for instance, he would push other children if he had to share a common toy). “We were [unsure whether] he would get along in a regular school,” says his chartered accountant father, “But his therapy sessions have proved helpful.” Earlier this year, the boy was admitted to a regular school in Goregaon, though the authorities did say that he must learn to mingle. While he still keeps to himself and rarely talks to strangers, he has made a few friends in the two months he has been in school. Two of his drawings are also on the walls of the NHCDC room. One is of a large colourful fish, the other of a bunch of fruits. His father takes pictures of them with his mobile phone.Dr Samir Dalwai, founder of NHCDC, is a development paediatrician. He says that it is essential for autistic and other such individuals to have regular lives in society. Figures for autism cases in India are not available, but studies in the US point to a rise in reported numbers. A 2008 study, conducted by the US government’s Centers for Disease Control and Prevention, found one in every 88 children autistic, globally. In 2006, it was one in every 110. In 2002, one in every 150. This could mean more people being diagnosed as autistic or more such individuals in existence. Either way, the challenge of their education cannot be ignored.Says Dr Dalwai, “Children with special needs should be brought up with the support of three pillars: mainstream schools, intervention centers [for therapy] and parents.” The puzzle-solving girl, who has been under the doctor’s care since last year, is making progress he says. Earlier, her parents would find her notebooks empty even if she were seated in the front row of a class. Temperamental and aggressive, she would grit her teeth and clench her fists if confronted. Her teachers had warned that she would not be promoted (she’s in class 2) if her behaviour did not improve. Now she visits the centre twice a week and her teachers have noted signs of improvement.Many schools now have counsellors and special educators on board. Aditi Mehta, a special educator who started working with a school in Juhu about two months ago, says she and other teachers identified 60 children in the school’s primary section who needed extra attention. Of the 30 or so she has met so far, many have severe learning disabilities. “Every day when they are free, or after school, I sit with each of them and try to help them cope,” Mehta says.That is not easy. The five-year-old who had to be carried to class on his first day, for instance, finds the zip-and-hook mechanism of his school trousers hard to figure out (he’d always worn elastic-band pants). Since he does not speak up in class either, this means he goes home with his pants wet every other day. His class teacher says that he does not sit at his desk for long, a more pressing problem, to counter which they’ve allotted him a desk in a corner with a wall on one side and another student on the other.The boy not only has sessions with a speech and occupational therapist, his mother spends two hours every day tutoring him at home. With the elder brother sent out to play and no distractions allowed, she shows him pictures and cards to identify images. Initially, the photographs were of family. “I would hold one of myself and ask him to identify it,” she says, “And many times, he couldn’t.” The child has now moved to sentence construction.Recently, on a morning of heavy rain, the boy’s mother learnt while waiting for his bus with him that school had been called off. But the five-year-old refused to budge from the bus stand. “I want to go to school,” he insisted.